Abstract

Traditional decision making theory in medicine and bioethics focuses on individual patients and grants no role to competent patient's families. Chapter I analyzes this model and illustrates its hegemony in bioethics literature, law, and clinical practice. ;Chapter II addresses medical decision making, identifying through case studies tensions resulting when the dominant model confronts the lived realities of families caring for disabled and ill members, including the sociological assessment of its limited ability to address relevant issues families and patients encounter in different life stages and types of health situations. Such challenges reveal the need for a broader, more family-inclusive model. ;Chapters III through V construct a family-based medical decision making model. Chapter III argues that empirical studies of surrogate decision making do not test the family's authority per se, but only assess the assumption that it rests on an accurate representation of patient wishes. Relying on Kuczewski's interpretive and deliberative family roles, it argues that the family's epistemic advantage and contribution to decision making are far richer than allowed by the dominant model's thin theory of intimate knowledge as predictive accuracy. ;Chapter IV analyzes justice as a more radical justification for including families, their interests, and those of their members in the decision making process, considering theories of Hardwig and Jecker. Special role-related obligations also guide the shape of justice within families. The conclusion here, as in Nelson and Nelson, is that the particularities of family history and relationship importantly determine what justice permits and prohibits in individual families. ;Chapter V describes the practical process, procedures, and structure of family-based decision making, including Doukas's family covenant and the Nelsons' strong moral self-determination. The argument draws upon McCullough et al.'s preventive ethics model for long-term care decisions and the AMA's partnership model to develop a practical proposal for family-based medical decision making, incorporating 12 cross-cutting issues that should figure in such an approach. ;Chapter VI recommends research regarding families and medical decision making and the development of an ethic for interactions between families and health care professionals. ;A family-centered model more realistically depicts the medical decision making process within families and better acknowledges deep human relatedness. Despite variations, intimate bonds often become more, not less, important in the face of illness and injury.